Should I give up on my doctor?

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CBusTaylor
New Member


Date Joined Apr 2008
Total Posts : 12
   Posted 4/17/2008 3:58 PM (GMT -6)   
I've been under treatment by my gastroenterologist for over a year now. We initially got things under control with steriods and then steady diet of colozol. about 2 months ago though my symptoms returned completely (7-10x in the bathroom a day, 1-2x overnight, bloody, loose stool, however no pain - ever). At that point he changed my medication trying to get my symptoms back under control... but it had no effect. 1 month ago we made another change... still no effect. I called their office again and unfortunately the soonest he can see me is 5 weeks from now but I'm still experiencing really bad symptoms. He recommended actually, since he couldn't see me, going to the ER. Now this was through his nurse so I couldn't really ask too many questions but I guess I was confused about what the ER could do that he, as a specialist who has been treating me for a year couldn't. So I'm frustrated!

Any advice? Get a second opinion? Go to the ER? Try solving it on my own with probiotics/supplements?

Thanks.

kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 4/17/2008 4:06 PM (GMT -6)   
GI's always seem hard to get into unless you have a steady relationship (which is no good either, means your always sick)

I would try to find another GI since you don't like the way your Gi is communicating. The ER is a good option if your symptoms persist. If you are having lots of D and loosing blood you can easily get much worse due to dehydration and anemia. The ER will call the GI on duty so you would still see a specialist he just would be one with no prior knowledge of you.

Good luck!
Kelly, 30

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, 5mg pred, 150mg Imuran
Prontonix once daily for acid reflux, zofran twice daily for nausea, darvocet for pain
Remicade started 3/1/08...just had 3rd infusion


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 4/17/2008 4:43 PM (GMT -6)   
I can usually get in right away to see my GI if it's an emergency, of course he has to double book but at least I can get in to see him. Otherwise, it can take up to 8 weeks for me to get in. I have to agree that maybe the ER would be a good option considering you can't get in to see your GI. Even if you were to sign up with another, it would be another wait. Or you can alway just call your existing GI back and pester them. Squeaky wheel gets the more oil kind of thing. So you're going about 12x's a day on average? With blood all the time? If so, then an ER visit might be in order. Anemia and dehydration like Kelly said is a dangerous combination if left untreated.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Fibromyalgia-'06~Sacroiliitis-epidural injections
To help Healingwell - click here: DONATE
 
 
 
 

 
 


CBusTaylor
New Member


Date Joined Apr 2008
Total Posts : 12
   Posted 4/17/2008 5:03 PM (GMT -6)   
I appreciate the good advice so far. To clarify, yes that's probably the right number of times I'm going the bathroom (~12x/day). I guess though while there's blood it doesn't seem to worry me. Maybe I don't think it's that much, but I suppose any isn't a good sign. I haven't really heard from my doctor previous about dehydration or anemia so I'll look into those. I certainly don't want to neglect what could be causing long term damage. I'm just getting frustrated that there's so little I can do (my doctors have told me diet and stress management aren't going to help) and that they seem to know so little.

Thanks.

Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5167
   Posted 4/17/2008 5:56 PM (GMT -6)   
I live in a large city that's chock full of doctors who take nights/weekends off. In the 1st half year after diagnosis with UC, I asked the doctor then treating me what to do if my symptoms suddenly got worse outside of office hours. What I really meant by "outside of office hours" was anytime the doctor was unreachable for whatever reason! The reply I got was: "Go to the ER of hospital where I'm affiliated, tell them your problem, mention that you're my patient, and ask to be admitted as a private patient." If you're not responding to 5-ASA meds, your situation definitely needs to be reevaluated so that you can start or resume taking a drug that does work ASAP. Any doctor's office that lacks concern for this predicament is either uncaring or unfamiliar with the needs of IBD patients, though. In the meantime, try to keep yourself hydrated with water, apple juice, and broth to replace the fluid/nutrients that you're losing due to frequent bms. / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily for maintenance of remission)

braillegirl
Regular Member


Date Joined Jan 2008
Total Posts : 66
   Posted 4/18/2008 5:59 AM (GMT -6)   
My GI sees UC patients with a flare within a day. He says he gives them priority because waiting is just impossible. (pun intended)
 DX: 1993: sulfasalazine; 1998: Pancolitis UC. asacal 2 2X daily, cortifoam,; 2003: Protitis UC severe flare. asaca 2 2X daily, canasa, cortifoam, cortenema
2008: Proctosigmoiditis severe flare. asacal 3 2X daily, canasa/discontinued while on pred, cortifoam/discontinued, Prednisone 40 mg to be tapered each week
Back on Prednisone 30 mg for 2 weeks then taper to 20 mg then we'll see. Back on Canasa at night.


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 4/18/2008 6:10 AM (GMT -6)   
From what I have read on here, it seems that GI's don't actually tell their patients much of anything including complications unless you ask them. And even then, some are don't believe in natural remedies, supplements, diet, etc. so they don't bother telling the patient. I, personally, have found that stress plays a huge factor in how I feel. I will flare after a highly stressful situation - not during however. When my gma was in and out of the hospital for her bladder cancer, my Uc behaved itself for the most part. But when she came home and things started to settle down, I flared pretty bad. Diet on the other hand, in my belief, should be altered to your life style and what agrees with you. It's tough finding the food culprit so that is where a food diary comes in handy. But many doctors just don't see that connection. My GI included. He is otherwise a really good GI, but his beliefs don't match mine but he lets me experiment all the same.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Fibromyalgia-'06~Sacroiliitis-epidural injections
To help Healingwell - click here: DONATE
 
 
 
 

 
 


julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 4/18/2008 6:15 AM (GMT -6)   
If your GI couldn't see you, I believe that he should have said to come into the office for a routine blood check and to be seen by a nurse or Physician's assistant at the least. Sending you to an E.R. -- to wait for hours when you feel like hell, where you could get put through unnecessary tests, and where you could pick up a bug -- seems irresponsible. Plus, what would that cost you and the hospital? It's just an inefficient way to get treatment for a flare unless you are seriously ill and need to be admitted.

I'd find another doctor who has a reputation for working with patients to find what works for each of them. Changing your drug combos should eventually work. Stress management helps. And diet works for some of us. I'm really sorry that your doctor shrugged you off, especially when you're having such a hard time. It's not easy to find a doctor you like. If you have a general doctor you know well and like, you could possible start there just to get another recommendation or some help for the short-term.

Hang in!
-------
UC for the last ten years
Current Meds: 6MP since 2006, Cortifoam
Past Meds: You name it; I've tried it. (Asacol, Colazol, Pentasa, DiPentum, Rowasa, Canasa, Cortenema, sulfasalazine)
5ASA drugs don't work for me. Canasa seems to make me worse.


lemonhead
Veteran Member


Date Joined Dec 2007
Total Posts : 1028
   Posted 4/18/2008 6:30 AM (GMT -6)   
My Gi also will fit you in if you are flaring. He will also move things around if he feels you need to be scoped to get you in sooner. He always returns phone calls within the day that you call, and I trust him with my life. If you do not feel the same confidence in your doctor, maybe you should ask around for recommendations about another one. 5 weeks is way too long to have to wait. My Gi always looks at me when I enter the office. it is not obvious, so sometimes I don't even know he is doing it. But once I asked him to be tested for anemia and he said that he looked at my fingernails and they were "nice and pink"....not anemic....at least not to a point that needed treatment. And there is something he looks for in the whites of your eyes too. (Can't remember what that is....maybe someone on here knows or you can look it up online). These are easy things you can look for yourself. Push on your fingernails if the pink returns immediately....you're ok, if not....ER would be a good choice. Post on here to see if anyone knows a good GI in your city. And.......feel better.
diagnosed with left-sided UC in 1997. (45cm)
Currently on 10mg Prednisone
12 caps of colazal    9 caps Colazal
2 rowasa enemas nightly
35, female


UC Dude
Regular Member


Date Joined Aug 2005
Total Posts : 438
   Posted 4/18/2008 8:15 PM (GMT -6)   
I think half the battle is having the "guts" to be a demanding customer and tell the Dr. what we expect of them and when.

When I am in need I am persistnet and pleasant. I am on a first name basis with my Dr's main nurses and I call and ask for them. They usually get me the info or attention I need right away.

The other thing you can do is to educate the heck out of yourself about this darn ailment so that you can be a good consumer. Don't wait around for the Dr. to give you the care you know you need. Come prepared and tell them. Do it plesantly and you will gain respect.

We know our bodies and symptoms better than anyone. Life is a buffet. Step up and get served. :)
 


Sharann
Veteran Member


Date Joined Sep 2005
Total Posts : 778
   Posted 4/18/2008 9:00 PM (GMT -6)   
Not good enough to tell you to go to the ER when it is not an emergency. HE is part of the problem we have in the country with overcrowding in the ER's! Why send you there when he can see you and prevent an unecessary hospital visit? If you were very dizzy, or bleeding too much or had fever or bad pain, then of course go to the ER.
He should fit you in within 24 hours. I know from having almost the same experience, and I did finally end up in ER after weeks of bleeding heavily. They just don't care or they are too busy to care.
By the way, my CD acts just like yours does CBusTaylor. Bleeding and gas and pain with or without BM's. I can do that up to 10 or 12 times a day. My GI just says, hmmmm. Helpful.
I am a Certified Doxie Lover(Weinerdogs)


CBusTaylor
New Member


Date Joined Apr 2008
Total Posts : 12
   Posted 4/19/2008 8:24 AM (GMT -6)   
Well, I'll give a quick update (not sure if anyone is interested but here goes). I was able to secure an appointment with my general practitioner the same day I called so I figured at worst I'm out my $10 co-pay. He was understanding but also stated much of what I've heard before - tough disease to deal with, people respond differently to treatment, it's not helpful to jump around too much with treatment. With regard to the ER he didn't see any reason why that was a good route for me to take. He had me run blood tests and give a stool sample and we'll go from there next week. He wasn't quite sure why my GI doctor hadn't talked about putting me back on prednisone. While it's not ideal it is something that might give me immediate relief. He also stated that if I'm concerned about my present GI doctor's care that I should seek a second opinion - trouble with that is I've called around and its 4-6 weeks before I can get an appointment. So I'm hoping my GP will have some good advice when my tests return. At least I've got someone listening, that eases some of the frustration.

bluepurl
Regular Member


Date Joined Feb 2008
Total Posts : 56
   Posted 4/19/2008 10:54 PM (GMT -6)   
glad to hear your general practitioner was able to see you and get you some advice. I think you may benefit from finding a new specialist, though it's a pain in the butt. 4-6 weeks seems to be the standard wait to get any appt for any dr in my area of the country too. you can always make an appointment, then call back in a week to see if they got any cancellations. just be superfriendly to the receptionists, maybe bribe them with candy :)

can your general practitioner refer you to a specialist they know? sometimes that can help you jump the line and get an appointment faster.
Get me a box of kittens, stat!
28 year old Jersey Girl
Asacol x 12, nulev x 4, generic rowasa at night
Thought it was IBS since 2002. Diagnosed left-sided UC 4/08. Starting SCD after Passover. Determined to get into remission before paintball season ends


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5167
   Posted 4/20/2008 9:02 PM (GMT -6)   
Depending on the results of your blood & stool tests, find out if your GP can contact your gastro about them quickly. That should open up an appointment for you, unless you don't want to return. It's not clear from your post whether you have pan-colitis or more limited inflammation. I'm wondering if that gastro put you on rectal meds at any time, in addition to the Colazal or other oral med. You might get good relief from hydrocortisone enemas, which have fewer steroid side effects than Prednisone, and are especially helpful against severe left-sided UC. Do keep us posted on your situation. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 4/21/2008 6:06 AM (GMT -6)   
Glad to hear that you were able to see your GP quickly. I agree with your GP that switching around with GI's isn't great BUT first you need to find a good doctor who you can work with. It didn't sound like your current GI is that person. You should not feel locked into this particular doctor especially when he's not responsive to your emergency calls.

Why not make an appointment with one of hte other doctors for 4-6 weeks from now? If you are totally happy by then with your current GI, you can use it as a second opinion about your treatment.
-------
UC for the last ten years
Current Meds: 6MP since 2006, Cortifoam
Past Meds: You name it; I've tried it. (Asacol, Colazol, Pentasa, DiPentum, Rowasa, Canasa, Cortenema, sulfasalazine)
5ASA drugs don't work for me. Canasa seems to make me worse.

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